WEBVTT - Prequel: The God Squad

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<v Speaker 1>Can you imagine having to make a decision about who

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<v Speaker 1>gets access to something that could save their lives, and

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<v Speaker 1>as a result, who doesn't get access. Would you use

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<v Speaker 1>a lottery system an algorithm? Would you make a call

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<v Speaker 1>on a first come, first serve basis? Well, in the

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<v Speaker 1>nineteen sixties in Seattle, a committee, almost like a jury

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<v Speaker 1>of local citizens were asked to do just that.

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<v Speaker 2>When first invited to serve on the committee, I was

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<v Speaker 2>very uncomfortable, feeling that I was taking the place of God.

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<v Speaker 1>We're about to hear from Rick Mazel, a medical historian

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<v Speaker 1>at the University of Houston. A few years back. Rick

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<v Speaker 1>was doing some research when he came across this story.

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<v Speaker 3>I'm a good and for punishment, I like topics that

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<v Speaker 3>are difficult to research and find.

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<v Speaker 1>He found this one article about the committee in Seattle

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<v Speaker 1>that caught his attention.

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<v Speaker 3>I was curious as to why I didn't know that

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<v Speaker 3>much about it. For whatever reason, historians have stirred queer

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<v Speaker 3>a bit of this conversation. It was really a fascinating

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<v Speaker 3>but difficult scenario to engage.

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<v Speaker 1>So Rick kept digging. He found out the story started

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<v Speaker 1>with the grand opening of a medical clinic. The treatment

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<v Speaker 1>the clinic provided was highly specialized and time consuming. So

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<v Speaker 1>time consuming that patients had to go in twice a

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<v Speaker 1>week and get hooked up to a machine overnight.

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<v Speaker 2>All night while they read or talk, or work or sleep.

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<v Speaker 2>The entire blood content of each patient as being circulated

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<v Speaker 2>through an artificial kidney and clean and pumped back into

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<v Speaker 2>the body again.

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<v Speaker 1>These clips from an NBC documentary called Who Shall Live,

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<v Speaker 1>filmed a few years after the Seattle Artificial Kidney Center opened.

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<v Speaker 1>It aired in nineteen sixty five on Nash Television and

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<v Speaker 1>created quite a stir. The kidney Center was revolutionary. It

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<v Speaker 1>was the first place in the whole world to offer

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<v Speaker 1>long term kidney dialysis, a brand new type of life

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<v Speaker 1>saving treatment. There was just one problem.

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<v Speaker 2>The cold, hard fact of the matter is, there are

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<v Speaker 2>just so many places available on the kidney machine, and

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<v Speaker 2>there are more applicants than places. Somebody has got to

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<v Speaker 2>be left out, and somebody has got to decide who

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<v Speaker 2>shall live and who shall die?

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<v Speaker 1>Yikes, who shall live and who shall die? When Rick

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<v Speaker 1>saw who the people were who would determine that, he

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<v Speaker 1>was shocked. The Kidney Center put seven seemingly random people

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<v Speaker 1>in charge. They would later come to be known as

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<v Speaker 1>the God Squad, the ones to determine the fates of

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<v Speaker 1>thousands of their neighbors. It was up to then to

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<v Speaker 1>decide which would be saved.

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<v Speaker 3>I thought it was pretty unbelievable that they would have

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<v Speaker 3>lay people and community people making this decision.

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<v Speaker 1>This whole thing, this attempt to figure out who should

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<v Speaker 1>have access, became so controversial, such a pivotal point that

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<v Speaker 1>it would become a wake up call for the need

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<v Speaker 1>for a more transparent system. This is a story that

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<v Speaker 1>paved the way to what is now known as bioethics.

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<v Speaker 1>I'm your host, Lauren Aurora Hutchinson. I'm the director of

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<v Speaker 1>the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics.

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<v Speaker 1>In this season a Playing God, we went behind the

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<v Speaker 1>scenes to discover how some of the most significant medical

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<v Speaker 1>innovations impacted people's lives and continued to whether it's saving

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<v Speaker 1>lives or creating babies, a new technology was usually waiting

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<v Speaker 1>in the wings, along with a multitude of ethical questions.

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<v Speaker 1>We looked at where we draw the line, should we

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<v Speaker 1>draw the line, what's right and what's wrong when it

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<v Speaker 1>comes to our bodies, And we turned to bioethicists to

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<v Speaker 1>answer these questions. But in this bonus prequel episode, we're

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<v Speaker 1>doing something different. We're going back in time to immerse

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<v Speaker 1>you in one of the most important foundational stories of

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<v Speaker 1>modern bioethics from Pushkin Industries and the Johns Hopkins Berman

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<v Speaker 1>Institute of Bioethics. This is playing God. By the nineteen fifties,

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<v Speaker 1>if someone had kidney disease, they could be surgically connected

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<v Speaker 1>to a machine called an artificial kidney, also known as

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<v Speaker 1>the dialysis machine. Dialysis at the time worked well for

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<v Speaker 1>anyone whose kidneys needed help for just a short while,

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<v Speaker 1>but people whose kidneys had failed needed ongoing dialysis for

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<v Speaker 1>life or they would die. Connecting to a dialysis machine

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<v Speaker 1>did a lot of damage to blood vessels, so there

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<v Speaker 1>were only so many sessions a patient could do. In

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<v Speaker 1>nineteen sixty, a young Seattle nephrologist named Belding Scribner decided

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<v Speaker 1>to do something about it. He designed a little U

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<v Speaker 1>shaped piece of hollow teflon called a shunt. It could

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<v Speaker 1>be left in a patient's arm or leg permanently to

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<v Speaker 1>use again and again to connect to a dialysis machine.

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<v Speaker 1>This meant chronic kidney disease would no longer be a

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<v Speaker 1>death sentence. I just want to pause here for a moment,

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<v Speaker 1>because even with the Scribner shunt, it wasn't possible to

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<v Speaker 1>treat everyone. So who should be granted access when there

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<v Speaker 1>isn't enough of something life saving to go around? This

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<v Speaker 1>question around the allocation of resources is one of the

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<v Speaker 1>most central questions in bioethics that's still being asked about

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<v Speaker 1>all sorts of things today. What's the best way, or rather,

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<v Speaker 1>what's the least bad way to resolve this kind of dilemma?

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<v Speaker 4>Well, here's what.

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<v Speaker 1>Happened in this case. In nineteen sixty two, the Seattle

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<v Speaker 1>Artificial Kidney Center opened at Swedish Hospital. Initially, the center

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<v Speaker 1>had just three machines and could only treat up to

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<v Speaker 1>nine patients. Each person selected would need to continue to

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<v Speaker 1>be treated for the rest of their life. At the time,

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<v Speaker 1>chronic kidney disease killed tens of thousands of people in

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<v Speaker 1>the US each year. Regular dialysis was their only shot

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<v Speaker 1>at staying alive. So how would the center choose which

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<v Speaker 1>patients would get a second chance at life? To begin?

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<v Speaker 1>Belding and the hospitals set up an initial screening process

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<v Speaker 1>to whittle down the thousands of patients to hundreds, and

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<v Speaker 1>in order to even be considered for a spot in

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<v Speaker 1>the first place, each candidate needed a referral from their doctor.

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<v Speaker 1>Rick says, we.

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<v Speaker 3>Don't know if they accepted referrals from black physicians, and

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<v Speaker 3>there were not many black physicians in the nineteen sixties,

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<v Speaker 3>which is part of what I argue is problematic about

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<v Speaker 3>the committee. You know, Seattle is still a city that

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<v Speaker 3>is highly racialized, highly segregated. It's not Alabama or Mississippi,

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<v Speaker 3>but there were still segregation in hospitals, which.

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<v Speaker 1>Of course had implications as to who would get referrals

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<v Speaker 1>to even be on the list. The center then had

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<v Speaker 1>specific criteria. Patients had to be between fifteen and forty

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<v Speaker 1>five years old. The hospital advised that children might not

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<v Speaker 1>be able to handle ongoing long term dialysis both mentally

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<v Speaker 1>and physically. Those of the right age then had to

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<v Speaker 1>show they could pay for three years of the treatment

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<v Speaker 1>upfront thirty thousand dollars the equivalent of three hundred thousand

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<v Speaker 1>dollars today, and they had to be able to access

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<v Speaker 1>the center twice a week.

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<v Speaker 3>Perhaps most problematic is they could not have underlying conditions,

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<v Speaker 3>so diabetes, hypertension, all of those things would disqualify you

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<v Speaker 3>from the possibility of chronic dialysis.

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<v Speaker 1>The medical advisory committee also interviewed the candidates to get

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<v Speaker 1>a sense of their psychological health.

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<v Speaker 3>So people who were emotionally unstable, who were poor, who

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<v Speaker 3>did not have certain kinds of jobs, who were unmarried,

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<v Speaker 3>who did not go to church were largely considered inherently

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<v Speaker 3>biologically flawed by the medical committee. Those were the individuals

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<v Speaker 3>who were not emotionally stable enough to deal with long

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<v Speaker 3>term dealysis.

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<v Speaker 1>The treatment center evaluated about fifty candidates for each available slot.

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<v Speaker 1>They would then whittle that number down and hand the

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<v Speaker 1>final decision over to the God Squad. The God squad

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<v Speaker 1>would then have to choose one person out of about

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<v Speaker 1>four candidates per slot. The people on the God squad

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<v Speaker 1>were not experts in kidney disease or dialysis. Only two

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<v Speaker 1>of them were medical professionals.

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<v Speaker 2>I am a banker, I am a surgeon, I am

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<v Speaker 2>a lawyer, I am a physician, I am a labor leader,

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<v Speaker 2>I am a housewife, I am a clergy many.

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<v Speaker 1>Belding, Scribner and his colleagues decided it was unfair to

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<v Speaker 1>burden physicians with making the final call. Their reason since

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<v Speaker 1>all of the candidates on their list would benefit from

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<v Speaker 1>the treatment and were deemed good candidates, the choice of

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<v Speaker 1>who to save was now really more of a social

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<v Speaker 1>one than a medical one. I can't help noticing where

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<v Speaker 1>they drew the line between this being a social decision

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<v Speaker 1>rather than a medical one, because to me, it seems

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<v Speaker 1>like so many of these factors were actually social anyway.

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<v Speaker 1>It was at this point they decided to turn it

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<v Speaker 1>over to the ordinary people of Seattle. It was their

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<v Speaker 1>job to evaluate these patients and determine who should live

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<v Speaker 1>and who should die.

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<v Speaker 3>There was a woman who was up for evaluation and

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<v Speaker 3>husband and sons said that she was no longer cleaning

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<v Speaker 3>the house. That was part of what they brought up

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<v Speaker 3>to evaluate her as to her worthiness of dialysis.

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<v Speaker 1>We'll be right back after the break. The God Squad's

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<v Speaker 1>official name was the Admissions and Policies Committee of the

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<v Speaker 1>Seattle Artificial Kidney Center at Swedish Hospital.

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<v Speaker 3>They, of course say that it represents a cross section

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<v Speaker 3>of the Seattle population. It was mostly men, mostly middle.

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<v Speaker 1>Clayer's administrators from the kidney center hand selected the God

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<v Speaker 1>Squad members. That's right, hand selected. The hospital gave the

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<v Speaker 1>committee an information packet on each candidate, with their medical records,

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<v Speaker 1>psychological evaluations, financial information, even letters of reference. One of

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<v Speaker 1>the doctors who briefed the committee later said, we told

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<v Speaker 1>them frankly, that there were no guidelines. They were on

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<v Speaker 1>their own. We really dumped it on them. The committee

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<v Speaker 1>decided to review every piece of biographical information they could

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<v Speaker 1>get their hands on. They also decided to enlist other

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<v Speaker 1>people to help them, a social worker and a psychologist.

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<v Speaker 1>What they were looking to determine was what they called

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<v Speaker 1>a person's social worth.

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<v Speaker 3>One of the criteria that the Patient Advisory Committee often

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<v Speaker 3>considered was the common good.

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<v Speaker 1>Rick says, if you read through the committee's records, you

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<v Speaker 1>can piece together what the members thought made someone worthy.

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<v Speaker 3>Being a white collar worker was better than being a

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<v Speaker 3>blue collar worker. A woman who was a known prostitute

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<v Speaker 3>was rejected for a woman who was a mother of four.

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<v Speaker 3>Another one that sticks out is a young man who

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<v Speaker 3>was considered to be, and this is the term that

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<v Speaker 3>they use, a never do or will a playboy, and

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<v Speaker 3>so he does not have the right temperament or morality,

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<v Speaker 3>then he's not worthy of theallises.

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<v Speaker 1>The committee members were kept anonymous, and their work happened

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<v Speaker 1>behind closed doors, But in nineteen sixty two, a prominent

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<v Speaker 1>reporter named Shana Alexander revealed their inner workings to the

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<v Speaker 1>world in a Life magazine article. Amazingly, all of the

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<v Speaker 1>committee members agreed to be interviewed as long as they

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<v Speaker 1>were not identified. The committee even re enacted one of

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<v Speaker 1>their first liberations so Shana could hear how they sounded

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<v Speaker 1>in action. Their conversations made it clear that to committee members,

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<v Speaker 1>what made someone worthy of saving was a matter of

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<v Speaker 1>personal opinion. We had voice actors read from the article.

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<v Speaker 5>If we are still looking for the men with the

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<v Speaker 5>highest potential of service to society, I think we must

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<v Speaker 5>consider that the chemist and the accountant have the finest

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<v Speaker 5>educational backgrounds of all five candidates.

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<v Speaker 6>How do the rest? Do you feel about number three,

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<v Speaker 6>the small businessman with three children. I'm impressed that this

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<v Speaker 6>doctor took special pains to mention this man as active

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<v Speaker 6>in church work. This is an indication to me of

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<v Speaker 6>character and moral strength.

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<v Speaker 7>For the children's sake, we've got to reckon with the

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<v Speaker 7>surviving parents' opportunity to remarry, and a woman with three

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<v Speaker 7>children has a better chance to find a new husband

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<v Speaker 7>than a very young widow with six children.

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<v Speaker 6>How can we possibly be sure of that?

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<v Speaker 1>Shanea's article not surprisingly caused outrage.

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<v Speaker 3>Lawyers at the time, you know, argue that it was

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<v Speaker 3>really just a way for physicians to avoid the responsibility

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<v Speaker 3>of making a difficult decision that they did not want

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<v Speaker 3>to make and that nobody wants to make.

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<v Speaker 1>Mostly, Rick says, people pointed out the obvious flaws with

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<v Speaker 1>a metric worthiness.

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<v Speaker 3>Someone who is, you know, an activist in the civil

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<v Speaker 3>rights movement. That's a social good, but it might not

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<v Speaker 3>fit within the ideals of what it is that they

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<v Speaker 3>think as a social good. So you could have a

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<v Speaker 3>respected business person who was still unethical in a number

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<v Speaker 3>of different ways.

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<v Speaker 1>In the end, the committee selected the first group of patients,

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<v Speaker 1>among them a physicist, an engineer, a car salesman, an

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<v Speaker 1>aircraft worker, and an oil company executive. By most accounts,

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<v Speaker 1>the God Squad kept meeting until nineteen seventy two. That year,

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<v Speaker 1>Congress passed legislation making dialysis available to everyone whose kidneys

0:14:30.720 --> 0:14:34.680
<v Speaker 1>have failed, but the committee lived on in public imagination.

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<v Speaker 1>Many people didn't get the life saving treatment they needed

0:14:39.880 --> 0:14:44.240
<v Speaker 1>because they were deemed less worthy. The God Squad were

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<v Speaker 1>people who just had to make up the rules as

0:14:46.640 --> 0:14:50.080
<v Speaker 1>they went along. There was no template yet for best

0:14:50.080 --> 0:14:53.960
<v Speaker 1>practices or ethical guidance in making these kinds of decisions.

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<v Speaker 4>They were starting from s, you know, and I think

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<v Speaker 4>that we have a much more robust literature. You know,

0:15:04.160 --> 0:15:07.400
<v Speaker 4>we have a history of bioethecal analysis to lean on now,

0:15:07.880 --> 0:15:10.840
<v Speaker 4>and of course we're still improving over time and how

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<v Speaker 4>we think about these things.

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<v Speaker 1>This is Kate Butler. She's a clinical neprologist based in Seattle,

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<v Speaker 1>and she says, what is key is to design a

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<v Speaker 1>system that's fair. But of course fairness can be understood

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<v Speaker 1>in lots of different ways.

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<v Speaker 4>Do we want to make the very best use of

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<v Speaker 4>resources in terms of saving the most lives in terms

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<v Speaker 4>of having the most life years lived? Do we want

0:15:34.680 --> 0:15:38.280
<v Speaker 4>to consider quality of life years lived? And if so,

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<v Speaker 4>who decides on quality? And or do we want to

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<v Speaker 4>make sure that we're allocating resources in a way that

0:15:46.320 --> 0:15:49.720
<v Speaker 4>feels equitable to us? And again, who is that us?

0:15:49.920 --> 0:15:53.120
<v Speaker 4>Who's making the decision about whether the system is equitable.

0:15:54.160 --> 0:15:58.080
<v Speaker 1>Kate told us that nowadays systems are based on ethical foundations.

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<v Speaker 1>For example, one way of doing things would be to

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<v Speaker 1>prioritize recipients who we expect to live the longest after

0:16:04.480 --> 0:16:09.600
<v Speaker 1>a transplant, which would be a utilitarian approach. Or you

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<v Speaker 1>could use a lottery so that everyone on the list

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<v Speaker 1>gets an equal chance of a transplant, which would be

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<v Speaker 1>based on the principle of equality. I mean, which one

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<v Speaker 1>do you think would be most fair? Kate gave an

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<v Speaker 1>example the National Weight List for kidneys, which is a

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<v Speaker 1>modified version of waiting until your number is.

0:16:27.880 --> 0:16:32.520
<v Speaker 4>Called, and that process has been worked out over decades

0:16:32.880 --> 0:16:37.880
<v Speaker 4>as a collaboration between clinicians, bioethicists, the community by way

0:16:37.880 --> 0:16:38.880
<v Speaker 4>of community forums.

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<v Speaker 1>There's an organization that monitors the systems to see if

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<v Speaker 1>it's working the way it's supposed to. It's called the

0:16:45.800 --> 0:16:50.520
<v Speaker 1>United Network for organ Sharing. In twenty fourteen, they discovered

0:16:50.520 --> 0:16:54.400
<v Speaker 1>a flaw. The waiting list wasn't accounting for some groups

0:16:54.440 --> 0:16:57.960
<v Speaker 1>of people, mainly people of color, having a harder time

0:16:58.040 --> 0:17:01.640
<v Speaker 1>getting on the list in the first place. In bioethics,

0:17:01.760 --> 0:17:05.600
<v Speaker 1>equity is a key principle. It's important to account for

0:17:05.640 --> 0:17:10.120
<v Speaker 1>disadvantage or underrepresentation. So they made a change.

0:17:10.359 --> 0:17:13.760
<v Speaker 4>There was an intentional effort to change the WEIGHTLISS criteria

0:17:13.840 --> 0:17:16.679
<v Speaker 4>to give you retroactive time for time since you started

0:17:16.760 --> 0:17:21.480
<v Speaker 4>on dialysis, so people would get points for the time

0:17:21.480 --> 0:17:24.320
<v Speaker 4>spent on the witlist or how long they had been

0:17:24.359 --> 0:17:25.920
<v Speaker 4>on dialysis, whichever is longer.

0:17:26.600 --> 0:17:31.080
<v Speaker 1>The change was apparent within months. The system still isn't perfect,

0:17:31.520 --> 0:17:33.960
<v Speaker 1>but Kate says, as an example of how the field

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<v Speaker 1>of bioethics has evolved since the time of the God Squad.

0:17:37.200 --> 0:17:43.080
<v Speaker 4>There's more to medicine than just clinical analysis of individual

0:17:43.119 --> 0:17:48.840
<v Speaker 4>cases that considering the bioethical implications of these decisions was

0:17:49.160 --> 0:17:52.399
<v Speaker 4>necessary and important. I think that's why people refer to

0:17:52.440 --> 0:17:56.320
<v Speaker 4>this example as the birth of bioethics today.

0:17:56.480 --> 0:17:59.960
<v Speaker 1>It's part of the process to consider ethics in medical advance.

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<v Speaker 4>Any situation in which you have resource scarcity for something

0:18:04.560 --> 0:18:08.520
<v Speaker 4>so consequential as healthcare, there's going to be tragedy, right

0:18:08.640 --> 0:18:10.320
<v Speaker 4>There's going to be someone who doesn't get the care

0:18:10.480 --> 0:18:12.400
<v Speaker 4>you want for them. We're not going to be able

0:18:12.400 --> 0:18:18.600
<v Speaker 4>to design a perfect system.

0:18:18.680 --> 0:18:21.720
<v Speaker 1>As we have heard from this series, the landscape is

0:18:21.840 --> 0:18:26.320
<v Speaker 1>ever shifting. Every time there's a new medical innovation, there's

0:18:26.359 --> 0:18:31.000
<v Speaker 1>a whole new set of ethical questions. If you've enjoyed

0:18:31.080 --> 0:18:34.320
<v Speaker 1>playing God, then we're going to have plenty more stories

0:18:34.359 --> 0:18:36.960
<v Speaker 1>like this coming out of the Ideas Lab at the

0:18:37.040 --> 0:18:42.560
<v Speaker 1>Johns Hopkins Berman Institute of Bioethics. Playing God is a

0:18:42.600 --> 0:18:46.359
<v Speaker 1>co production the Pushkin Industries and the Johns Hopkins Berman

0:18:46.440 --> 0:18:50.879
<v Speaker 1>Institute of Bioethics. Special thanks to our guests in this episode,

0:18:51.160 --> 0:18:55.520
<v Speaker 1>Rick Mozelle and Kate Butler. Emily Vaughan is our lead producer.

0:18:56.440 --> 0:19:02.120
<v Speaker 1>Production support from Sophie Crane and Lucy Sullivan. Our editors

0:19:02.240 --> 0:19:06.520
<v Speaker 1>are Karen Chakerjee and Kate Parkinson Morgan. Theme music and

0:19:06.600 --> 0:19:11.960
<v Speaker 1>mixing by Echo Mountain, Engineering support from Sarah Brugare and

0:19:12.000 --> 0:19:17.760
<v Speaker 1>Amanda Kaiwang. Show art by Sean Carney, fact checking by

0:19:17.840 --> 0:19:22.760
<v Speaker 1>David jar and Arthur Gompertz. Our executive producer is Justine

0:19:22.840 --> 0:19:26.760
<v Speaker 1>Lang at the Johns Hopkins Berman Institute of Bioethics. Our

0:19:26.800 --> 0:19:31.119
<v Speaker 1>executive producers are Jeffrey Kahan and Anna Mastriani, working with

0:19:31.200 --> 0:19:35.720
<v Speaker 1>Amelia Hood and with support from Susan Snead, Aaron Henkin,

0:19:36.080 --> 0:19:42.280
<v Speaker 1>Abigail Brickler, Kim bikermer Anna Oakes, and Jamie Smith. Funding

0:19:42.359 --> 0:19:46.920
<v Speaker 1>provided by the green Wall Foundation. Special thanks to voice

0:19:46.960 --> 0:19:51.960
<v Speaker 1>coach Vicky Merrick. This is our last episode, so we'd

0:19:52.000 --> 0:19:54.320
<v Speaker 1>like to thank some of the many people at Pushkin

0:19:54.440 --> 0:19:59.920
<v Speaker 1>who've supported this show throughout the season, including Jacob Weisber,

0:20:00.840 --> 0:20:08.719
<v Speaker 1>Heather Fame, John Snarz, Letal Malad, Greta Cohne, Carl Migliori,

0:20:10.040 --> 0:20:18.840
<v Speaker 1>Jasmine Perez, Eric Sandler, Jordan mcmill Isabella Navarez, Nicole op

0:20:18.920 --> 0:20:28.080
<v Speaker 1>Den Bosch, Maya Kanig, Jake Flanagan, Owen Miller, David Glover,

0:20:29.280 --> 0:20:35.480
<v Speaker 1>Nina Lawrence, Mia LaBelle, and Ian Petsa. To learn more

0:20:35.520 --> 0:20:39.440
<v Speaker 1>about Bioethics and the issues presented in this series, please

0:20:39.560 --> 0:20:45.080
<v Speaker 1>visit Bioethics dot jhu dot edu forward, slash Playing God.

0:20:46.240 --> 0:20:50.240
<v Speaker 1>I'm Laurena Rora Hutchinson. Thanks for listening to Playing God.

0:21:00.480 --> 0:21:04.240
<v Speaker 1>If you're interested in learning more about these stories and discussions,

0:21:04.520 --> 0:21:08.119
<v Speaker 1>visit the Berman Institute's guide to the podcast at Bioethics

0:21:08.160 --> 0:21:12.359
<v Speaker 1>dot j u dot ed u, slash Playing God, or

0:21:12.359 --> 0:21:15.200
<v Speaker 1>find us on social media at Burman Institute